Emily’s Story

My younger sister Erin was diagnosed with type 1 diabetes in 2003.  She had just turned seven, and I was ten. Inquisitive home-schoolers, Erin and I received a thorough education about the disease over the next several days as doctors, nurses, nutritionists, and social workers whirred and buzzed around us at Boston’s Children’s Hospital.
*They taught us about the overwhelming details, demands, and risks of the day-to-day regimen. Words such as keytones, hypoglycemia, and ketoacidosis were suddenly added to our vocabulary. There were also the muffled descriptions of potential long-term effects of the disease, including reduced life-span, heart disease, renal failure, blindness, and amputations.Sprinkled among the warnings and admonitions were happier messages—words of hope and encouragement about how, generations before, the disease would have taken Erin, about advances in treatments and possible cures on the horizon, and about the world-renowned experts and institutions in the Boston area.The knowledge we gained  at the hospital was the very  knowledge we craved — we left assured that Erin would live a long, healthy life and that, yes, a cure was on the way.

When my parents asked about causes of type 1 diabetes, however, the responses were brief and vague. Diabetes, the doctors explained, does have a genetic component, but that link is not by itself sufficient for the disease to manifest. It also requires an environmental trigger. One of our doctors speculated that whatever the cause, we were in the midst of a dramatic increase in the incidence of type 1 diabetes in recent decades, suggesting that something in our environment has changed (see sidebar). On the topic of causation nothing more was said.

We didn’t give it much thought until a few years later, when my brother Ian was diagnosed with type 1 diabetes.

As strange as it was to learn that the once-rare disease was now quite common in my family, we did not have to look far for other examples of statistically improbable occurrences of the disease.

For instance, down the street from our house lives Doug Melton a Harvard professor, who runs the Center for Regenerative Medicine at Massachusetts General Hospital and the Harvard Stem Cell Institute. Dr. Melton has devoted his prodigious training and intellect to finding a cure for type 1 diabetes because both of his children have it.

Just months after Ian’s diagnosis, Dan Hurley’s book, Diabetes Rising, was published. It chronicles “the fastest growing disease in history” and describes how “the world we’re living in is a diabetes machine.” The book’s gripping opening narrative describes the recent experience in the small, affluent town of Weston, Massachusetts.  Weston, Massachusetts is, as the crow flies, just a few miles from our front door.  According to statistics from the Centers for Disease Control, a town the size of Weston should have only one new diagnosis of type 1 per year.  Over a recent fourteen-month period, however, there were seven such diagnoses in  Weston.  As Hurley describes:

The town’s school nurses had never seen anything like it. Even though some of the kids were too young for school, and some went to a private school or lived over the town line, there were now eight children with type 1 diabetes attending Weston public schools, including those diagnosed in previous years. By comparison, during the 18-year span between 1978 and 1996, the nurses could not recall there ever being more than one or two at any time in the 2,300-student public school system. Some years there had been none. Type 1 diabetes, after all, was supposed to be rare. Really rare.

 

What is going on? Why has this rare disease become not-so-rare? Those questions have occupied me to the point of distraction, and I have been perplexed that more people aren’t similarly curious.

I recognize that my perspective is unusual. It’s understandable that people with the disease are less concerned with causes than they are with treatments and cures. After all, once afflicted with an incurable illness, there is little use in focusing on causal questions. It’s understandable, I suppose, that those without the disease optimistically assume that they are not really threatened by it. To assume otherwise would itself be depressing, perhaps debilitating.

Couple that with the fact that in our culture, most of us need an issue to touch us directly before we consider it our own. Few of us take on a problem without a sense that we’ve been impacted by the problem directly. And, even when we do “adopt a cause,” we rarely devote ourselves to eliminating the source of the problem; instead, we physically exert ourselves in the name of the problem—a walk for breast cancer, a run for leukemia, or a ride for kidney research. Again, our efforts are devoted to finding cures, not understanding or eliminating causes.

For diabetes, I have done my share of those events and my part to promote research for a cure. Indeed, when I was ten my family spent a full year traveling around the U.S. on our “tour four a cure.” Our goal, as it said on our website, was “to raise awareness about and funds for research leading to a cure for diabetes!” We were interviewed by newspaper and television reporters. We took part in “diabetes walks” and had dinner with “Mr. Diabetes” (who was literally walking around the country to raise money). We heard from Morgan Spurlock, who had just come out with his movie, “Supersize Me,” and who ordered one of our fundraising pet rocks. We were even contacted by Good Morning America about getting into the big city for an interview—an RV-driving challenge that my parents were ultimately not up for. Our story had legs.

What doesn’t attract an audience, however, is the disconcerting message that we are experiencing epidemics of many types in part because of some unnoticed changes to our environment. Learning that a person has been cured of a disease is uplifting. Examining how we might alter, maintain, or restore our environment (and the policies, systems, lifestyles, and choices that underlie it) in order to prevent thousands of people from getting that disease isn’t. Yet preempting an illness seems at least as beneficial in its effects as curing an illness is. We should be as eager to prevent someone from falling victim to a disease today as we are to cure that same victim tomorrow. We should be as ready to divert a problem upstream as we are to deal with the problem downstream. But we are not.

I have several theories for the presence of that gap. One is people’s unjustified optimism that they are invulnerable to diseases that they don’t already have. From our naïve perspective, the “type of people” to get a particular illness are the people who actually have that illness–something “they” have, not “us.” My brother and sister, for instance, are now “diabetics” and those who encounter them don’t take seriously the possibility that the forces that turned off my siblings’ pancreases leave us all more vulnerable. Perhaps that is why so many people react to news that they themselves have a disease with the question, “why me?”—as if a categorical mistake had somehow been made.

In that sense, my relationship with diabetes is unusual. The disease has not only touched my family directly, it looms as a salient threat to my person, as well. I take very seriously the possibility that I might be next. In part for that reason, I want to know what it is about our environment or experience that has triggered the autoimmune disease in both my sister and brother, because, frankly, I don’t want it to have the same effect on me.

Maybe that is why my interest extends beyond treatments and cures to something that relatively few people are talking about: causes.

Perhaps if the only health risk confronting us were type 1 diabetes, and the only costs were the direct costs to the victims of that disease, ignoring causal questions would make sense. But that is not the situation. The trends in type 1 diabetes are similar to those for countless other diseases, all of which are on the rise and which cumulatively pose a significant threat to each of us: Crohn’s disease, lupus, rheumatoid arthritis, asthma, obesity, cancer, and so on. As Dr. Leo Trasande, one of the experts I interviewed points out, the problem is especially dramatic among children:

We are in an epidemic of environmentally mediated disease among American children today. Rates of asthma, childhood cancers, birth defects, and developmental disorders have exponentially increased, and it can’t be explained by changes in the human genome. So what has changed? All the chemicals we’re being exposed to.

Even if we are among the lucky ones who manage to remain healthy and whose families remain untouched by these epidemics, many of the economic and social costs are inescapable–as health care costs increase, and with them insurance rates, and so on.

Whether or not we feel at risk of becoming the next victim of this or some other disease, there is still good reason to care about causes. The general rule for most of today’s epidemics (type 1 diabetes being an exception) is that they disproportionately impact the lives of the relatively impoverished, vulnerable, constrained, and disadvantaged.  Peggy Shepard, the Executive Director of WeAct.org (an activist organization working to promote environmental justice in northern Manhattan neighborhoods), recently described to me how communities like hers have

been disproportionately burdened by pollution, ha[ve] had no environmental benefits, and ha[ve] borne all of the burdens of our society and community like sewage-treatment plants, bus depots, and waste-transfer facilities.  All of those types of facilities do have to go somewhere:  they are a result of how we live, but one community should not have to bear the brunt, the burden of waste, for the whole city.

When you realize that over eighty percent of Latinos live in non-attainment areas for clean air standards and that over seventy-two percent of African Americans, you understand perhaps why there are such glaring disparities, why there is such an asthma epidemic, and why it is so important for us to clean up our air.

Similarly vulnerable are the future generations who are given no meaningful voice in how our generation treats the environment, but whose health and very existence depend upon our being mindful stewards of the planet that was handed down to us.   To them, we are living upstream, with all the responsibility that entails.

As Dr. Ana Soto, one of the world’s leading experts on endocrine disruptors, explained to me, the toxins that we humans ignore today are the toxins to which we will succumb tomorrow.  The dire predicament of our species requires us to “[to] think very profoundly about how we are going to save the world for our children so that they don’t have the problems . . . that are increasing in human populations . . . and that have been linked to environmental causes.”

In light of all that is at stake, we are obliged to focus on causes because it’s the right thing to do. In a society committed to equality, fairness, and self-preservation, the new epidemics are contrary to American values; they are unjust.

Knowing now what we now know, we can no longer take moral refuge in the fog of ignorance. As Dr. Trasande puts it, “We are the humans in a dangerous and unnatural experiment.”  Increasingly, physicians are diagnosing and treating diseases that they recognize have environmental causes, and the scientific community is discovering the environmental triggers behind those diseases. Ignorance in my generation is bordering on willful. It is time to acknowledge the need to heal our planet to heal ourselves.

Type 1 Diabetes

  • Type 1 and Type 2 diabetes affect some 23 million people in the U.S. alone.
  • Type 1 diabetes is an autoimmune disease that occurs early in life, often in children. For whatever reasons, the body’s immune system begins attacking and destroying the beta cells in the pancreas needed to produce the hormone insulin. Insulin is what ushers blood sugar (glucose) from the bloodstream into the cells to create energy. Without insulin, glucose levels in the bloodstream rise and cannot be absorbed by the body, which quickly wastes away as if starved.
  • About 1 in every 400 to 600 children and adolescents has type 1 diabetes – a ratio that has been increasing significantly over the last few decades.
  • Type 1 diabetes (when the body stops producing insulin altogether) often is, but shouldn’t be, confused with type 2 diabetes (when the body does not respond properly to the insulin that is produced). Type 1 diabetes is an autoimmune disease and is generally described as “unpreventable,” in the sense that weight, fitness, and lifestyle play no role. In fact the vast majority of people who develop Type 1 diabetes are the picture of health when they get the disease. For that group, regular injections of insulin are absolutely required for survival.
  • Type 2 diabetes is highly linked to obesity, diet, poor fitness, and lifestyle. Prior to the obesity epidemic this type of diabetes only occurred later in life (but with obesity rates on the rise in children, so is the incidence of type 2 diabetes). It can often be treated through diet and exercise.
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